Hi

[Michelle2015]

Hi

Just been diagnosed with pbc.

Struggling to deal with the news

[PBCRobert Partner]

Michelle,

I fully understand where you are right now. I would ask you to give us a call where we can help you specifically with where you are right now and where you go from here.

You are in very good company, I promise you.

Yours,

Robert.

[phone]

[butterflyEi]

Hi Michelle2015

it is a shock when first hearing the news. Thanks to this wonderful forum and the PBC Foundation you will find others who are able to share. For myself I was lucky to get a diagnosis whilst in the early stages that was nearly 10 years ago and for the most part I am well and enjoy a good quality of life as do many contributors on here. The PBC Foundation has a members section, it is worth joining (it is free to join) where you can read more about PBC.

I do hope that once your news sinks in you will find ways to cope and manage.

best wishes

[Geordielasstx]

Hi Michelle,

I was dx a year ago and still struggling to come to terms. With support from this group and others on Facebook I'm learning to accept and manage it better.

My hardest part is my sisters and mother and rest of family not beliving. They read slow to progress which I'm grateful for but no sympathy from them. Not that I want it.

I'm here if you need to chat. I mean this. I have several good friends who have Pbc and makes a huge difference.

Don't be afraid and try not to let it run your life.

Hugs. X

[Hidden in reply to Geordielasstx]

Hello Geordielasstx.

You are not alone in the fact that family members have some sort of 'problem' with the fact someone has PBC. Because we 'pop a pill' every day it can be assumed that everything is fine, it is under control and we can get along with life.

I look perfectly normal on the outside but only my husband who lives with me knows what it is like for me come evening time. I itch at night and many a night I have broken sleep. It rolls over on to the day as I start to feel tired in the afternoon. I get annoyed at times by comments like, 'I get tired too' and then the reason why they do but with PBC it isn't a tiredness that is caused by later nights or partying for eg., it is the PBC.

My husband didn't take it seriously at all during 2010 when I was on the path to being informed I had PBC at aged 46. He even wanted me to alter my first hospital appointment because they cancelled the first one and then sent me a replacement appointment that coincided with a week's holiday he had booked. I managed to change the appointment to the following week after the holiday when I explained that he had booked it knowing the appointment was due before we went away so they understood.

When I was diagnosed I did say to my husband he could leave me. We had originally become friends through letter-writing when he was in the army overseas during the late 1990s. I was a widowed mother at the time and I did and still do letter-writing for a hobby. It took us until end of 2008 to finally meet up and then we were married May 2009. Before we had been married a year I started to itch.

I never informed my husband that PBC could lead to transplant and when he attended hospital with me following the consultant's diagnosis (he got the GP to inform me) I let the consultant fill my husband in and he ended with the word transplant. I think that shocked my husband somewhat. Has taken some adjusting to life together since I was informed I had PBC as in the early days of taking urso I had a few temporary side-effects, I didn't want to take a tablet every day and I continued to itch but it has taken a few years to settle to a more bearable state. I am almost 51 now and just gone 4 years since I was told I had PBC. We treat all the freetime we have like it is the last and enjoy it all.

[Geordielasstx in reply to Hidden]

Thank you so much Peridot. You have soothed my mind some.

Lovely story about how you met your husband and I'm glad he has stood by you.

I've been a Military wife (USAF) for many years and he is now DOD and still moving countries every few years. I'm British and he is American and we have been fortunate to be stationed back here. Have 20 months to do and hate to think where next.

I'm being taken care of by internal medicine on the RAF base. Think it's time to see a specialist. Think Addenbrookes have a good one as I'm in the east Anglia region.

This disease has changed my life but I'm trying not to let it run my life. I'm managing it mentally a bit better. I'm trying not to let it flood my thoughts as it has. I'm not opening the door to it. I keep telling myself this.

I suffer with stomach problems, gastroparesis and have had GERD most of my life. I was a premature baby and very sick from birth and also have bad a massive brain hemohrage.

Really, I'm blessed to still be here and what I have seen and lived around the world.

I have 3 daughters (one step). They love me to no end and I know if ever will take care of me and I have the best husband In the world.

When I re-read, how lucky am I really :). Blessed.

Huge hugs friend and huge thanks.

Your a blessing. X

[Hidden in reply to Geordielasstx]

Hello again Geordielasstx.

Well from my husband's point of view, being cared for by the RAF medically is apparently a better thing. He has always said that you get better treatment and care. (He was back on 'Civvy Street' when we finally met up.)

Given you are in East Anglia you the nearest hospital that does specialise in liver I think would be the Queen Elizabeth? I know when I looked on their site awhile ago now they actually had their own newsletters and info on PBC. I just had to attend the local hospital that runs different clinics during the week but it is all gastro-enterolgy. I attended the day it was hepatology.

Can't have been easy with a brain haemorrhage. My sister who is a year younger than I am suffereed a ruptured aneurysm that led to brain haemorrhage late 2013 and she is still attempting to recover. I spent nearly all last year regularly visiting her in various hospitals in the region. She was discharged 5 months ago and she is slowly getting herself back together.

Yes it is so good that you have been out and about in the world and taken it all in. All adds to life. I am not worldly travelled as I do think that the UK can offer so much for us to see and my husband and I are attempting to visit various places of interest and beauty where you can do a lot of walking. Fortunately last year we went to Cornwall for a week and also Pembroke and the weather was hot and sunny the whole time.

Although I have PBC as almost everyone on this site has (some post when their results are pending), I think even though PBC is a thing we all would not wish upon ourselves, the reality is that we do and due to it we are more than likely to make the most out of life as we can possibly can. We not longer take it for granted if we did (I never did due to being widowed with 2 young children before I reached age 30) and ironically I think we might live our lives better than we might have done if we never had PBC.

Hope you manage to get into some sort of balance with PBC and also the medical profession as I do think doctors can either be a niggle or an help. For me so far I find it is my doctors who tend to cause more stress for me at the best of times.

[Hidden]

Hello Michelle2015.

Sorry to read that you are at the stage that majority of others on here have more than likely left behind. I ws diagnosed with PBC late 2010 at aged 46. I only heard about PBC after I was informed I had a liver problem. I read library books and then came across a few sites, PBC Foundation was one, on the net. I had a couple of symptons at the time but hoped I didn't have PBC. I never mentioned it to the GP and then I asked the consultant on my first appointment when he mentioned some 'special blood tests' and the word 'antibodies' if one was for PBC. He just said yes one was and we'd go from there.

I asked the receptionist at the GP surgery when I got a call asking me to go in as the GP had results from hospital what medication I was to be prescribed. I knew when she said ursodeoxycholic acid. I think I had begun to start to get my head together by that time but it wasn't easy.

I think the words 'no cure' and if anyone has mentioned how PBC can finalise can be a scary scenario. But I'm still chugging away 4yrs on from diagnosis and also it's 5 years almost since I started itching and on the road to being informed I had PBC.

I think you do need time to start getting it together and it does take time. I think it is as time passes and you reach the 12 months mark and your bloods have improved on urso that you start to come round. At the beginning it can be a case of wondering if you'll be here in the next few years.

I had to spend time over the months following diagnosis adjusting to not only the fact I was to take urso every day for the rest of life but a few temporary side-effects and then I had the dreadful itch that was not good during 2010 pre-diagnosis at all. I started to get life back together and it has in all honesty taken me a few years. The itch has lessened to just night time and it has actually got better over more time. My bloods are still good. I've just got the one sympton I know - the itch - of PBC. I did have fatigue in 2010 but that vanished at some point 2011.

I choose to not think about what PBC could become as to me it might never happen and there's no use worrying about something that might never be. To me that is time wasted. I've tried to help myself even more over the last few years but have somehow resolved with myself no matter what I do the itch is here to stay but at the moment thankful it's not over-bearing.

Yes there is no cure for PBC but we never know in the future. I have my views on the way forward with PBC but not sure if it will come in my lifetime - I am nearly 51 now.

My husband and I enjoy life as much as we can as you never know what's round the corner. PBC might not eventually be my demise as it's said that it tends to be something else that is down for that. Majority of us will die having PBC but that isn't the cause of it.

There are a few things I miss now - going to cinema at night (I couldn't sit for even a film now as start feeling prickly in the evening) for eg but I have adjusted.

There is a free DVD available from LiIver North, I'll post the website on here. I hve read their online newsletters that you'll find on there. I have found that although this group covers other liver conditions, it seems that the most common topics from them are PBC. There is also PBC Foundation, if you make yourself a member you can log in on their site and see their compendium. There is also British LIver Trust but personally I do not rate it for myself (too much about avoiding liver problems which is difficult with PBC when it isn't known how it develops).

livernorth.org.uk/

[cazz22]

Hi michelle2015.i was diagnosed in2013due to nodules on my liver/pancreas.they thought I had cancer.anyway Pbc seemed to be the culprit.that said I live an entirely normal life.no real symptoms as such.if you can read up /find out as much as you can about Pbc.GP s and even some consultants seem uneducated about it.ive had to point many things out to them,then forget about it.i wish you well for the future x

[GrittyReads]

Hi Michelle,

Try not to worry. As others have already said, PBC does not necessarily have to have a major - or negative - impact on your life. Many of the people on here lead a perfectly normal life, while maybe taking the medicine, others are perhaps a bit more careful with weight, diet, exercise, etc as well - but it often depends on the individual.

Out of interest, did your consultant give the exact reasons why you were being formally diagnosed with PBC? Did you have a biopsy, or was it based on blood tests; that is: testing positive for AMAs (antimitochondrial antibodies), and having abnormal liver functions tests (lfts)? Also, do you have symptoms? It helps to spell these things out in your question info, as we are all so different. Some people who only have +ve AMAs may never go on to develop PBC, and it is a bit of a contentious area, for people to be diagnosed PBC if they only have AMAs.

Whatever your signs and symptoms, it is a good idea to talk to the PBC Foundation people, and to read their folder, as much of the stuff online about PBC is very outdated and often unnecessarily scary.

Good luck, I hope it all goes well.

[NotorDJP]

It is a lot to wrap your mind around. Do yourself a favor and don't hit the internet with questions about his. You will get a lot of old stuff that will make you very upset. There wasn't that much research in the past and enough time hadn't passed to show the efficacy of Urso on the disease. Everyone is different with this disease too. I don't want to blow sunshine up your butt (Hoosier expression ha!) and say everything will be good forever, amen. Who knows? I have great days and days that are horrible. I was at stage 2 before I was diagnosed and started into symptoms, so my results may vary. But so far I have shown good response to the medication and I am hopeful. I go back to my doctors in feb, and will get an updated liver panel. I will be interested to see if my ALP has gone down more. It may never be normal again, but at least my other liver tests are. I am a little more concerned about my bilirubin and albumin levels as well as platelets. Those are what you really need to watch. You have several good answers here. I'm sure almost anyone on here would love to chat with you privately if you wanted to do so. Take care.

[Michelle2015]

Thanks everyone, for your kind comments. I am struggling with the tiredness and holding down a full time job. How does everyone else cope with it all

[Grannacat]

I struggle with the fatigue as well. I work full time but don’t really feel like doing much by the end of my shift.